I can't bring myself to use the CPAP

Reidan · Post by **Reidan** » Thu Aug 30, 2007 11:42 am

My wife had a CPAP machine for over 2 years before I got mine. Has not slowed us down at all.

How about having a little Role Playing fun with the mask. I read on another posting that someone called their mask a Pilot Mask. How about a Top Gun Role Playing session?!?

I used to call my wife Darth Mama! Imagine Role Playing as Darth. Wave your hand toward your hubby and say in your best Darth Vader voice. "The Force is Strong in this one!" or grab a piece of your womanly anatomy and say. "These are the Droids you have been looking for!"

Now "Move along, move along".

Iskander · Post by **Iskander** » Thu Aug 30, 2007 11:46 am

Hi, SleeplessinCLE,

Have you asked your husband about it? It's a big change, there's no denying that, but I wonder if maybe your fear that he won't find you attractive is something you're transferring to him? Talk to your doctor, also, about the terror you felt, and if you can, try different masks. If you're couging in the night, perhaps the humidity of inbound air is not correct, and can be adjusted.

I'm lucky, I guess, I found the outrush of air through my open mouth more weird than frightening, although I vehemently dislike the inability to talk. Perhaps you could try experimenting with the sensation before you sleep, and reassuring yourself that it's more strange than something to be afraid of.

In the end, for me - and I'm just starting the therapy - I'm so tired all day that it's beyond worth it just to get good sleep. The increase in energy I'm looking forward to when I'm properly rested will give me even more appetite for sex, I think. Bonus!

Take care, and congratulations for coming somewhere to talk about your fears - it's a first step to conquering them!

- Isk.

Goofproof · Post by **Goofproof** » Thu Aug 30, 2007 12:10 pm

You have to put it aside and make it work. It's better to do than have him to have to break in a new (Younger) wife, because you wasted your chanch at better health.

Younger wives can be the death of us older husbands. Jim

gasp · Post by **gasp** » Thu Aug 30, 2007 7:56 pm

SleeplessinCLE wrote:Maybe I'm too vain, but I can't get past what I saw in the mirror.

I don't know why I have this anyway. I'm not over weight (5'3" 138 lbs.). No high blood pressure (102/68) I don't snore (I've asked about that.)
They said my apnea was "moderate". I don't know what that means.

The whole experience at the sleep center was horrible. From seeing myself with that thing on to being awaken by the terror of suffocating. I guess I coughed in my sleep and when my mouth opened, the rushing out of air choked me. I panicked and couldn't breathe. I couldn't get the mask off quickly. It was terrifying. I was awake for at least 45 minutes after that. On top of not being able to fall asleep to begin with and becoming fully conscious 4 other times, I got less sleep that night than I ever did at home.

I've heard of an appliance that can be worn like a mouth guard. Has anyone heard of or used that?

Thanks,

I used a Mandibular Advancement Device (MAD) for over a year. I did a sleep study with the device and was told it reduced the occurrences but not enough to be considered a device I should use. The first few months were not pleasant. The doctor said I may experience some salivation when beginning use of the device. I experienced so much salivation that my pillow was wet. I fought the device in the night and had a sore jaw, but never did develop any jaw problems from wearing the device. When removing the device in the morning, my lower jaw took a minimum of 15 minutes to return to a normal position.

To keep the warranty in place, I had to visit the provider once a year at a cost of $100.

I really wished it would have worked, but I am going for significant reduction in OSA events and didn't get it with the MAD.

Now that I've experienced both, I like the mask and machine better. Let me know if you want more info.

Snoredog · Post by **Snoredog** » Thu Aug 30, 2007 8:04 pm

you sound like the perfect candidate for that Pillar procedure, those patients usually give up before they ever give it a chance to work also, you can find out more about it below, they say just have them put in and you are all done:

http://www.talkaboutsleep.com/message-b ... m.php?f=10

ozij · Post by **ozij** » Fri Aug 31, 2007 10:12 am

SleeplessinCLE

SleepGuy was telling you what the disease means. Moderate apnea means that you're being "moderately" choked, loosing oxygen, fighting for breath, every night.

Each and everyone of the people taking the time to answer you puts on a mask at night before they fall asleep.

If you think you look hideous in the mask I'm sure you would think the same if you saw anyone of us.

And yet, we, these very "hideous looking" people are trying to help - giving you of our time, experience and caring. Do you honestly think we're hideous? More (or less) than you in a mask? And we don't care one little bit about how you really look. We care about your life.

Do you honestly believe that there's value in a person only if and when they look great?

Society has done its best to train women to think and feel that their looks are the only thing of value about them - that doesn't make it true.

I can understand both men and women having major problems adjusting to a suddenly disfigured face, or body when you've had an accident. But such drama over a mask that you can put on and take of in a minute? I guess you must be terribly terribly proud of the way you look and the mask a terrifying reminder that one of these day you're going to lose those looks - and everything you value about yourself.

You probably will loose your looks, you know. Age changes us. And should you have a stroke -God forbid - and you may find one side of your face drooping, an eye shedding tears uncontrollably, you mouth drooling. You may loose the ability to talk - you won't be able to explain what you want or feel - despite knowing full well what it is.

Here's your chance of asking some hard question about you value system. Do some browsing in the forum - listen to all these people who put on their mask every night - and ask yourself if that's not a bunch you'ld like to be friends with.

I was upset at my "life sentence" and then I found this forum - 2.5 years, and many many members ago. And for me this has been one of the most beautiful views I've had of humanity.

I hope you'll learn to see and find that beauty in yourself too.

And if you are unfortunate enough to hava an unsupportive spouse, who really can't understand the need for cpap, nor accept you with it, consider yourself very lucky for having discovered it now, and not later. When the going gets really tough.

O.

Nodzy · Post by **Nodzy** » Fri Aug 31, 2007 11:26 am

SleeplessinCLE wrote:Maybe I'm too vain, but I can't get past what I saw in the mirror.

I don't know why I have this anyway. I'm not over weight (5'3" 138 lbs.). No high blood pressure (102/68) I don't snore (I've asked about that.) They said my apnea was "moderate". I don't know what that means.

The whole experience at the sleep center was horrible. From seeing myself with that thing on to being awaken by the terror of suffocating. I guess I coughed in my sleep and when my mouth opened, the rushing out of air choked me. I panicked and couldn't breathe. I couldn't get the mask off quickly. It was terrifying. I was awake for at least 45 minutes after that. On top of not being able to fall asleep to begin with and becoming fully conscious 4 other times, I got less sleep that night than I ever did at home.

I've heard of an appliance that can be worn like a mouth guard. Has anyone heard of or used that?

SleeplessinCLE,

You are absolutely right. Living with a mask strapped to the face every night is horrible. It is so horrible, in fact, that millions of people are thrilled to do it in order to have a chance at living to an older age, probably being healthier along the way... and feeling better on most of those days because they are actively participating in maintaining their health.

What you see in the mirror while wearing a mask is you. The mask isn’t you. It’s an accessory that you should use if you care to live better with OSA. Denial will only take you out of life sooner than if you embrace the therapy and accept that it can help you maintain better health.

Sure, you may not have many of the classic OSA symptoms now, but in not being successfully treated you will eventually be saddled with them, or much worse. We all die from some cause, and we all deteriorate as we age. I choose to delay that cash-out date and live healthier until I get there.

It’s not a matter of liking the hand you’ve been dealt. No one in their right mind would like having OSA or any other disorder or disease. It should be a matter of wanting to live as healthy as possible for as long as possible.

So what -- you need to wear a mask while sleeping. You need to have breathing assist while sleeping. Would you prefer to be untreated and develop any number of many dozens of associated ailments, each of which can be, more potentially without-warning permanently disabling or deadly? It happens every day to hundreds of people who have untreated sleep disorders.

Given a choice of health state, I doubt that anyone on PAP therapy would choose to be saddled with it or the associated ailments. Given a choice of therapy and living better verses remaining untreated and feeling bad and getting worse every week, month and year… the vast majority would sack their vanity and pride in a flash and choose to live.

No one here has anything to gain by you choosing to embrace therapy, or decline embracing it. (Well, the personal satisfaction of helping another sufferer is a gain.)

The thousands of people on this board help each other. I found here a huge supportive family, friendship, caring, compassion, knowledge, experience and many people who have sleep disorders far worse than my plight. They survive. They grasp that it’s a lifeline for them. They appreciate the lifeline, and each other. They listen, they offer help and they care.

Obvious or not, the replies you have received are a small part of that caring and concern. Don’t slap the offers down. Don’t value your image in a mirror more than a healthier and probably longer life.

If you were drowning would to ignore a life-ring tossed to you because its color didn’t match your outfit? If you were hanging by fingernails from a cliff would you ignore a rescue harness lowered to you because you might look silly being rescued with mussed hair, smudged makeup, torn and soiled clothing and bleeding skin?

No one here wants to see anyone die untreated, or not be treated successfully and left in misery. In all of my years I have never felt more welcome more quickly, and more genuinely, than on this board. You’ve been given gifts… the PAP unit, the mask, this board, support, caring and answers. People here do not get paid for their time, energy and caring. They help each other because they want to. That is a gift for the ones receiving it.

Finally: Wake up to the realities. You have OSA. It will not magically disappear from your life. It is a hindrance, not an impassible chasm on your road in life. You have tools at your disposal with which to face the ailment head-on and counter it. You have this board and the collective knowledge and experience with OSA, therapies and products totaling many hundreds of years. Milk it and benefit.

<shaking head> I’m done.

I wish you the best in whichever course you choose.

Nodzy

sharon1965 · Post by **sharon1965** » Fri Aug 31, 2007 12:54 pm

well said, nodzy

i felt/feel the same way as you, having found this forum a month or so after being diagnosed, and immediately finding help, support, suggestions, sympathy, empathy...the list goes on and on...

i am one of those people who is thrilled to have found a way to manage this disorder and, with a little luck and lots of perseverance, maybe reverse at least some of the damage it has done to my health...i won't say it's been easy finding the right interface and combination of fixes/tweaks/accessories, and sometimes it's still a struggle, but i'll tell you what: last week i bowled 4 games with my son (!) and yesterday i took my kids on a nature hike through a conservation area...these are things i couldn't have done before cpap, even if i wanted to...so am i grateful? uh...yeah

sleeplessinCLE said:

I don't know why I have this anyway. I'm not over weight (5'3" 138 lbs.). No high blood pressure (102/6 I don't snore (I've asked about that.)
They said my apnea was "moderate". I don't know what that means.

many of us don't know why we have this...all my life i've suffered from excessive tiredness, chronic pain, fatigue, and up until a few years ago i was underweight to normal weight...i suffered a crash where the symptoms all became too much for my body to manage anymore and the weight piled on to the tune of 40 lbs in less than 6 months, by which time i could barely function...i feel lucky to have finally been diagnosed after spending most of my adult life trying to find out why it always felt like my body was betraying me...i think you should try to see how lucky you are that your disorder was discovered while you are still normal weight with normal blood pressure...maybe it's hard to accept something like this when you feel just fine, but just think how much damage has been avoided with this diagnosis coming before the damage could be done (if you're not familiar with the possible effects of untreated OSA, which can include heart failure or stroke, do some more reading and research and hopefully it will help you to see what's really important)

sincerely, best of luck to you
sharon

Nodzy · Post by **Nodzy** » Fri Aug 31, 2007 1:17 pm

sharon1965 wrote:well said, nodzy

i felt/feel the same way as you, having found this forum a month or so after being diagnosed, and immediately finding help, support, suggestions, sympathy, empathy...the list goes on and on...

Sharon,

Thank you. I didn't join the board until multiple years after being diagnosed, and in unsuccessful, miserable treatment through those years. I regret not having joined-in with the hose-head clan sooner. Besides the knowledge and obviously beneficial information and guidance I found here, I also thoroughly enjoy the mix of people and their humor. It is supportive in so many facets. Too, it's an outlet for me where I don't feel like an outsider reaching in.

I am pleased to know that you found successes in your therapy through the board -- you and your family benefit.

Be well...

Nodzy

socknitster · Post by **socknitster** » Fri Aug 31, 2007 1:32 pm

First of all: I want to validate what you experienced at the sleep study--feeling scared and not able to get the mask off fast enough--it is scary. It happened to me once or twice. The first week. Then I got used to it--the mask and the air. Could you give yourself a week? A week isn't much to a sleep-deprived person.

You didn't end up at the sleep clinic because there is nothing wrong with you. You know that or you wouldn't be here looking for help.

My husband is ECSTATIC about me using cpap. You know why? I'm not too tired to do all the incredibly fun things we like to do anymore. And I'm not cranky 24/7. I sleep less and wake up easier (used to take an hour or more to wake up and I sometimes slept 12-14 hours on the weekends, but not anymore!)

I am a happier, more productive person--which is what my loving husband wants for me. Doesn't yours?

Do we still have sex? I'm on cpap--not dead. And I have a very curious 4-yr-old in the house--we have to be creative! Ever heard of afternoon delight?

If your husband loves you and you love yourself--put on the mask and be glad you have something easy to treat and not a brain tumor or cancer. You will get used to it just like the rest of us have.

And welcome to the forum--you have found an excellent place to find the information you will need in your new journey to a better, healthier life.

Jen

SleeplessinCLE · Post by **SleeplessinCLE** » Tue Sep 04, 2007 5:19 am

Ok. Ok. I tried the machine for 2 nights. Both times I had to stop it after 2 - 2 1/2 hours of torture.
See, I don't fall asleep very quickly. It's documented on my sleep studies. It took 39 minutes the first night and 43 minutes the second night for me to fall asleep. It very difficult to just lie in bed totally still for 40 minutes so I turn and turn until I fall asleep. Well, with the hose et al, it's a production to rollover, so I kept John up all night, too.
The hose rubs on the bed making noise, I have to almost sit up to turn, it's a disaster. So, just as I feared, if I'm going to use this machine, I'll have to go to another bedroom.
I just don't understand why no one has come up with a better machine.

echo · Post by **echo** » Tue Sep 04, 2007 5:43 am

Hi Sleepless,

Yes it can be a difficult process, it takes longer for some than for others to adjust, but there are ways of making the transition easier:

- Snugglehose : a nice cloth blankey for your hose so it doesn't make noise as it rubs around on the bed, floor, etc http://www31.brinkster.com/snugglehose/index.asp
(The link doesn't seem to be working today, but you can get the blue color from cpap.com, or you can make your own)

- PurSleep : nice scents that can help calm you or help you go to sleep http://www.pur-sleep.com./

- Putting the hose above your head, tied to a headboard with a scrunchy or similar, so that moving around is easier

- Clipping the hose to the sheet , with some slack, so that it doesn't move around as much

As for snuggling with the hubby... well after a few weeks my BF said to me "your CPAP is my god". Um, why, I asked? Cause I now have enough energy to have sex more frequently, and I'm a better mood and not a total bitch.

Once your hubby sees your treatment working, I am sure he will be all for it. Of course as others have said, are you projecting your own phobias onto him?

Humor also helps!!!!! Go to the Yellow light bulb, find CPAP humor, and read some of MikeMoran's posts - they are too hilarious, and they help when you're feeling so frustrated about the whole machine thing. You are not alone!!!

Oh and about falling asleep - it usually takes me literally hoiurs to fall asleep.. but now that i've gotten used to the CPAP (and it's working!), I fall asleep sooooo easily .. It literaly cured my insomnia, where nothing else could before (I tried every over the counter drug - melatonin, valerian, etc).

So take your time, use it for as long as you can every night, and you will get used to it.

echo · Post by **echo** » Tue Sep 04, 2007 5:57 am

Forgot the PAPillow of course: http://shop.talkaboutsleep.com/?action= ... difference

(You can also get it from CPAP.com)

socknitster · Post by **socknitster** » Tue Sep 04, 2007 10:49 am

[quote="SleeplessinCLE"]Ok. Ok. I tried the machine for 2 nights. Both times I had to stop it after 2 - 2 1/2 hours of torture.
See, I don't fall asleep very quickly. It's documented on my sleep studies. It took 39 minutes the first night and 43 minutes the second night for me to fall asleep. It very difficult to just lie in bed totally still for 40 minutes so I turn and turn until I fall asleep. Well, with the hose et al, it's a production to rollover, so I kept John up all night, too.
The hose rubs on the bed making noise, I have to almost sit up to turn, it's a disaster. So, just as I feared, if I'm going to use this machine, I'll have to go to another bedroom.
I just don't understand why no one has come up with a better machine.

SleepGuy · Post by **SleepGuy** » Tue Sep 04, 2007 11:52 am

Slepless, congrats for trying!

Your experience is not unusual. You're getting some great advice on the forum. Keep at it. Like I said earlier on this thread, treatment is not just about sleep. Untreated OSA will destroy your health due to low blood oxygen. Doctors are just now starting to figure this out. They are also figuring out that some 50 million Americans are at high risk for OSA.

Keep at it; hang in there. You'll get it figured out!

Mask	Humidifier

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